Collaborative sensemaking under uncertainty: clinicians and patients

I've been discussing a couple of 'conceptual change' projects with clinicians, both of them in topic areas (pain management and contraception) where the clinical details aren't necessarily well understood, even by most clinicians. I have been struck by a few points that seem to me to be important when considering the design of new technologies to support people in managing their health:

1. Different people have different basic conceptual structures onto which they 'hang' their understanding. The most obvious differences are between health professionals (who have received formal training in the subject) and lay people (who have not), but there are also many individual differences. In the education literature, particularly building on the work of Vygotsky, we find ideas of the 'Zone of Proximal Development' and of 'scaffolding'. The key point is that people build on their existing understanding, and ideas that are too far from that understanding, or are expressed in unfamiliar terms, cannot be assimilated. In the sensemaking literature, Klein discusses this in terms of 'frames', while Pirolli, Card and Russell discuss the process of making sense of new information in terms of how people look for and integrate new information with existing understanding guided by the knowledge gaps of which they are aware. In all of these literatures, and others, it's clear that any individual starts from their current understanding and builds on it, and that significant conceptual change (throwing out existing ideas and effectively starting again from scratch) is difficult. This makes it particularly challenging to design new technologies that support sensemaking because it's necessary to understand where someone is starting from in order to design systems that support changing understanding.
2. One of the important roles of clinicians is to help people to make sense of their own health. In the usual consultation, this is a negotiative process, in which common ground is achieved – e.g., by the clinician having a repertoire of ways of assessing the patient's current understanding and building on it. The clinician's skills in this context are not well understood, as a far as I'm aware.
3. For many patients, the most important understanding is 'what to do about it': it's not to get the depth of understanding that the clinician has, but to know how to manage their condition and to make appropriately informed decisions. Designing systems to support people in obtaining different depths and types of understanding is an exciting challenge.
4. Health conditions can be understood at many different levels of abstraction (from basic chemistry and biology through to high-level causal relations), and we seem to employ metaphors and analogies to understand complex processes. Inevitably, these have great value, but also break down when pushed too far. There's probably great potential in exploring the use of different metaphors and explanations to support people in managing their health.
5. As people are being expected to take more responsibility for their own health, there's a greater onus on clinicians to support patients' understanding. Clinicians may have particular understanding that they want to get across to patients, but it needs to be communicated in different ways for different people. And we need to find ways of managing the uncertainty that still surrounds much understanding of health (e.g. risks and side-effects).

All these points make it essential to consider Human Factors in the design of technologies to support conceptual change, behavioural change and decision making in healthcare, so that we can close the gap between clinicians' and patients' understanding in ways that work well for both.